March 14, 2011
THE BIG LONG RAMBLING RUN DOWN
it's been nearly a month since we flew down to SF to see DR H. i think it's high time i take a stab at giving a medical run down on where things have been, where they are at and where we go from here.
bottom line for me is that i am incredibly run down. if i were any more run down, i'd be under the ground. in the past 7 days, things have really gone sideways but i'll break that down another day. first things first, i need to back it up and give a run down on the past couple of months. and besides, i HATE posting stuff out of chronological order. i like order. about the only place right now that i can have order in my life is on this blog. i have to backtrack for the time being even if it confuses people. so bear with me. i started writing this while we were in SF and that was a month ago already.
so obviously to get things almost current (remember i'm not including the past week) this post is going to have to be a big, long, rambling run down. i actually wrote the bulk of it while we were in SF in mid february but then i had trouble posting it to my blog and i wanted to post pictures to break up the miles of text but they wouldn't load and then more crap happened and things got crazy. not that it ever stopped being crazy.
the last 4 months have been rough. i'm talking epic proportions type of rough. it's gone way beyond just the rigors of keeping up with the daily routine of dispensing meds for 3 people, reconstituting IV meds, infusing IVs - (parker is on IV roughly 3 -4 hours a day and i average about 2 -3 hours a day) - filling prescriptions, drug runs across the border, IV supply orders need to be made and picked up;
way beyond the weekly rounds of varying appointments with physiotherapist, psychologist, trauma therapist and doctors. way beyond the stress of trying to ensure parker somehow gets an education through this and trying to give avery opportunities to do "normal" stuff in the midst of this chaos and trying to not excessively worry about taylor, my on-the cusp-of-adulthood teenage son, whom has to cope with his illness and the delay it has caused in his plans for the 'rest of his life'.
it's way beyond the challenge of trying to parent and nurture and support and make the best out of a really awful situation. it's gone beyond "the regular run of the mill, chronic illness issues" that i (we) live with each day kind of ill. far beyond the standard, "i'm dragging myself thru the day feeling like death warmed over and the verge of hysterical collapse." yeah. i'm used to that. i've learned to function with that. i (we) can soldier on thru that.
it's beyond all that.
it's the combination of all that
plus the constant onslaught of trauma produced by the crazy, unpredictable ways this disease manifests and that over the past 4 months, someone is ALWAYS acutely ill. even my "healthy" kid has been sick. repeatedly sick. and so have the boys. and so have i. maybe it's all of that that has ultimately culminated in running me face first into the ground.
i have spent a large part of the last 3 months acutely ill. the seizures i had at the end of october triggered barfing. of the last 127 days, i have barfed 87 days. the barfing is directly related to the infection in my brain and is not a "stomach" issue. i have no nausea and suprisngly i've not lost my appetite at all. actually it would be shocking if that ever happened... i love food way too much to not eat. barfing or not. i've just learned that some foods are not as palatable to "re-experience". ha ha
one of the worst?
tacos and chocolate cake
too much information.
anyhow, my dysfunctional brain and it's associated misfiring is proving to be one heck of a force to reckon with. in december, DR H started me on a new IV abx. this seemed to help with the barfing. about 2 weeks after starting it, the barfing slowed down and petered out for about 14 days straight (a record). this was good - until i uncorked from the other end.
and so began the "if i'm not barfing, it's coming out the other end" or vice versa cycle. lovely. real lovely. the diarrhea was a major cause for concern too because being on abx puts me at risk of developing c-difficile. fortunately, my c-diff testing has been negative. actually, everything intestinal related in me checks out just "fine" - aside from the fact that i'm either barfing or exploding out the other end. ahem.
basically, the bottom (ha ha) line, is that the barfing and the diarrhea are brain related and NOT gut related. lucky me. obviously, all of that, has quite literally knocked the stuffing out of me and left me pretty vulnerable to opportunistic infections like the flu. and what the hek! this flu and viral stuff that is going around this year is rampant and virulent and it DOESN'T GO AWAY! since mid december, i'm (we're) stuck in this vicious, horrible, repetitive, exhausting cycle of
week after week after loathsome week
and the barfing
my endless barfing
an increase in the barfing is the red flag warning that i'm heading into a herx now. and herxing is like heading into a twilight zone. swollen lymph nodes. anxiety and panic attacks. joint pain. blurred vision. dizziness. shortness of breath. low grade fevers. shaking chills. tremors. hypoglycemic episodes. intense noise sensitivities. arrhythmia. insomnia. brain fog. intense depression. that horrible internal pressure.
and the minute the madness lets up and the intensity would recede, i'd come down with the flu. confused? i know - a lot of my symptoms sound like the flu - how do i tell the difference? i don't know how to explain it. it's just different. very very different. "lyme & co. sick" is so different from "regular sick" yet it is difficult to explain. in comparison, having the flu is a walk in the park. i know the flu is miserable. it IS awful. i'm not trying to minimize how terrible a nasty bout of the flu can be but lyme launches you into a whole other realm.
i guess the bottom line (ha ha, i'm saying that a lot) is that the flu doesn't make you think, feel or act like you are crazy. the flu doesn't cause complete nervous system chaos. the flu is miserable and makes you feel like death warmed over but it doesn't leave you pre-occupied with thoughts of death for days on end.
the flu doesn't leave you begging and pleading with God to let you die.
lyme does that.
anyway, back to the herx/flu/crisis cycle.
the flu decended upon our house in december. we suspect it accompanied avery, our only "healthy" kid home from school. i came down with it, just as i was coming out of a herx. it took me a total of 3 weeks to get over it. by the end of january, my weight bottomed out and i was the lowest i have ever been since getting sick. and just so super run down. i was just starting to getting back some semblance of "my kind of normal functioning" when parker headed into a brutal herx
and then avery caught a cold
and then i went thru another herx
and then parker got the flu
and then taylor went thru a herx
and then i got a chest infection
and then parker went thru a herx
and then taylor ended up in the hospital
then i nearly had a heart attack (ok, not literally, but getting a call telling you that your kid is being rushed to the hospital via ambulance is ummm, really, super scary)
and then he (taylor) and we with him, spent 7 hours in the ER
and then 2 days later, graham went out of town on business
he was away for 4 days and that pretty much did me in. oh, i soldiered through it, trying to keep up but i was so brutally run down. and the chest cold that had been lingering around for weeks went straight to my head. i started running fevers of 104 again. my head felt like it would implode. my lymph nodes on my neck were epic in size and my ears started to hurt. really hurt. the day before we left for SF to see DR H, graham took me to a walk in clinic. turns out i now had a sinus infection plus double ear infection.
nice. i had to get on a plane and fly because we were leaving for SF the next morning
that is the condition i arrived at DR H's office in.
one look at me, in all my puffed up, swollen, run down, apathetic glory and DR H made it pretty clear that there is not a lot that we can do right now.
i am too run down
now i have finally arrived at the medical run down portion of this post and the outcome of our in office appointments with DR H (which were on Feb 15)
there are 3 distinct issues going on with me;
1. the viral/flu component - these stupid infections just keep re-circulating. and not just through our home, i think they're pretty much holding the entire northern hemisphere hostage.
2. the brain issues - lyme, bartonella, and babesia is entrenched deep in the hypothalamus region of my brain. it is unclear which infection or if all 3 are playing a role. DR H suspects that either bart or babs is causing the most havoc.
3. i have PTSD. post traumatic stress disorder. ( i have been seeing a trauma therapist for this since january)
what is not so clear is how much of each of these is impacting the overall picture. that is yet to be determined. there is much overlap with the symptoms associated with each. the fact, that i'm so run down really complicates the picture. DR H suggested that we move to BALI for a period of time so that i can get rest. that was not a joke. apparently, one can procure a housekeeper, nurse and accommodations for really cheap. but yeah, moving to BALI for 6 - 8 weeks, cheap or not, is not exactly ummm, feasible. so somehow we've got to find a way through this. i don't know. no idea.
in the meantime, DR H couldn't really change much in my current treatment protocol. we just have to slowly chip away at this beast in my brain.
we're targeting the viral component with some herbal/homeopathic remedies;
immunavira, biocidin, APV 20
i am having swelling issues again, so i am being re-started on daily injections of lymphomyosot.
i will continue on the IV abx, Zithromax and starting on the oral abx, minocycline. i will start on a low dose (100mg) and slowly ramp up to the full dose of 400mg. once i am up to full dose of mino and if my symptoms do not flare too badly, then i will start another abx called avelox.
i will continue to be on lamictal for the seizures. mestonin and gabapentin for CNS regulation. glutathione injections 3x a week for detox. zopiclone for insomnia. ativan for anxiety and panic attacks.
and naturally, there are multiple supportive supplements, minerals and vitamins - like chromium, moly-b, magnesium, fish oil, mundipur, etc. etc.
i will have a follow up phone appointment with DR H in 4 weeks.
anyhow, that's the run down on me. on to the boys.
parker is not out of the woods by a long shot but DR H was very pleased with his progress so far. and we are too. he's endured some pretty horrendous stuff - the psychiatric symptoms that manifested once we started his IV treatment were nothing short of horrific. unimaginable. but those symptoms have dramatically lessened in severity and his last really huge psychiatric episode was on december 20.
he continues to have bouts of what he has termed "loopiness" and is in tremendous pain but he is improving. slowly but surely. in january, he was able to get to school about 2-3 mornings a week for anywhere from 1 to 3 hours. unfortunately, he was not able to sustain that level of attendance and by end of january he was mostly home bound again. of course, the stupid flu bug circulating through our house played a role in that. (at least, that's what i hope)
of course, one step forward, 2 steps back. but really, his overall improvement in january was a very wonderful and significant sign of progress.
with parker, every day is different. hek, every HOUR is different. his symptoms flip from severe to mild nearly all day, every day. it's hard to explain. one minute he can be writhing on the ground in pain, or sitting on the couch, talking 'gibberish' or 'loopy' or 'zoned out' and the next minute he's out shooting hoops.
yes! shooting hoops. he continues to be in a tremendous amount of pain however, it is true, he is starting to be more and more free of his wheelchair. he also was able to be a part of his school's basketball team. he was even able to play a couple minutes of 2 games. that was super cool and very emotional. actually, considering parker was on 3 to 4 hours of IV everyday during that, it's remarkable that his body could manage that much activity.
so the game plan now is as follows:
he will continue to be on the oral anti parasitical called malarone for his babesia infection. he will continue to be on gabapentin for his CNS issues however over the past 1.5 months, we have been able to dramatically lower his dosage. that is a good thing.
DR H has him on quite a rigorous detox protocol. he will continue to have glutathione injections 3x a week. he is also taking alka seltzer gold (believe it or not!), renelix, itires, and mundipur. DR H is also adding in alkabase. of course, there are a few other minerals and vitamins too. oh yeah and the ursodiol which is a drug that helps to protect his gall bladder from the side effects of the IV abx, rocephin.
DR H is starting him on a drug called low dose naltrexone. it's been interesting to learn about this one. very interesting. a little weird. i'm too tired to explain it but here's a link if you are interested...LDN homepage
parker will continue on 2 different IV abx, rocephin and zithromax. plus additional IV fluids for detox. so he will still be on IV 3 to 4 hours a day. DR H is upping the dose of Rocephin. this hits the lyme bugs that are in the brain. DR H told us to expect an increase in parker's psychiatric symptoms again. THAT SUCKS - we're pretty worn out from our last go around with all of that.
taylor. taylor. taylor.
my strong, first born son.
my soldier son who suffers in silence.
and he does
i don't like it
i don't know how to write about it
this has been a really tough haul for him. i cannot imagine being 18 and trying to deal with this. DR H said he couldn't have done it at this age. it's not just staying on top of taking pills or the rigors of treatment and symptoms flares and herxing that is tough. it's so much more than that.
it's being stuck at exactly the time in life when it's most obvious that everyone is moving forward. he'll be 19 this year and at a time when he should be out striving for his dreams, he's watching them fall to pieces.
as a mom, it is awful to watch your kid suffer. and struggle. and hurt. and it's happening at one of the most pivotal, confusing times in a parent/child relationship. it's hard. really, really hard. illness messes up the natural order of things. it often strips you of your independence. add to the mix, that this is happening during the exact time frame in his life where it is normal and healthy to actively seek autonomy and break away. well, even under normal circumstances, that process for both parent and child is difficult. painful. bumpy. uncharted territory.
taylor has tremendous faith and strength and he is a remarkable young man but he also has an 18 year old young man's brain. being a young man encompasses pushing the envelope, feeling invincible, burning the candle at both ends, pulling all nighters with friends playing (stupid) video games and eating copious amounts of total crap food all with relatively little impact to your overall health.
he is different
doing "normal" young guy stuff is going to have long term consequences for him.
truth be told, he is struggling to find balance or strive for balance...mainly with his sleeping and eating habits.
and DR H told him point blank, not getting and keeping those things in check, is downright detrimental and could be deadly.
that FREAKS me out
i worry about this with taylor so much. and i feel like i haven't figured out a balance for myself in all this - how do i balance supporting him and yet kicking his butt into gear at the same time? i don't know. i hate that. i'll leave it at that and move on to the medical aspect of taylor's run down.
there has been improvement with taylor. at the beginning of every in office appointment with DR H, we have to fill out very, very long symptom check lists - it is an arduous task, especially with brain fog. however it really helps the patient and DR H gauge whether specific symptoms have improved, gotten worse or remained the same. taylor was pretty amazed at how many symptoms he could check off as "improved". that was encouraging for him to see and for us to hear about. sometimes, ok, most of the time, the improvement is so hard to 'see' because his life is so far from 'normal'. his progress was most notable this fall - in fact, by the end of november, he felt consistently well enough to start working part time. however, besides working a couple of shifts a week and spending time with his girlfriend, mara, he is able to do little else. some weeks are better than others. and there have been and continue to be many ups and downs. like that ambulance ride.
that happened the beginning of february. he was driving to work and all of a sudden got severe abdominal pain, dizziness and started to throw up. he tried to white knuckle it and drive himself to the hospital. thankfully, he was wise enough to realize his condition was not conducive to that type of bravado. he pulled over and called 911. later on we found out that on scene his blood sugar was elevated to 15. he was in very rough shape. there could have been tragic consequences had he not pulled over. pshhht. can't even think about that.
both graham and i were in an appointment with our trauma therapist as this was unfolding. i know, ironic, right? it's ok to laugh about that. we do. at least we had cleared some trauma and made room for the fresh trauma of getting a phone call saying our kid was on his way to hospital via ambulance.
we were a 40 minute drive from the hospital when we got the call. it was a long, stressful, upsetting drive. when we got there, taylor was in so much pain and so frail looking and so super extraordinarily pale. he was crying. and it was awful.
we spent the next 7 hours in the ER. once in hospital and on fluids his blood sugar returned to normal but he had sugar in his urine and elevated liver enzymes. he was sent for abdominal ultrasound which came back normal. the ER docs could not figure out what was wrong with him.
he did come round and the pain started to go away about 3 hours into the whole ordeal. that was a huge relief. as he started to feel better, you could actually physically see it. in fact, his girlfriend, mara, who had rushed to the hospital too, all of a sudden remarked,
"oh wow! look, you must be feeling better - you are brown again."
that was pretty hilarious and so true and it really helped to lighten the mood. in spite of the stress of the whole situation, we managed to make the best of it.
taylor was discharged from hospital without diagnosis except for the ER doc suggesting that maybe "it - whatever it was" had been caused by "one of those weird drugs" he's on for lyme disease. yeah. that comment was ridiculous and upsetting and not at all helpful. he's not on "weird drugs" - at that time, he was on 2 COMMONLY prescribed antibiotics. the docs attitude didn't come as a surprise to any of us but it was upsetting nonetheless. i am so tired of the hostile environment surrounding lyme.
anyhow, DR H doesn't really know what went wrong or caused all those crazy symptoms. he does suspect that it could have been 1 of 3 things;
1. a herx
2. a kidney stone
3. a gall stone
it may forever remain a mystery. so long as it doesn't happen again. but you know, who knows, we're at the point where all we do is cringe and think "what's next?"
at any rate, DR H was pleased with taylor's progress, but like us, very concerned about his sleep patterns. lyme really messes with your sleep. big time. the insomnia is brutal. however, not all of taylor's being up late at night is caused by lyme anymore. some of it is habit now. some of it is a coping mechanism. that balance thing again.
in order to help his body physically recalibrate, DR H is starting him on a low dose of hydrocortisone and an anti-depressant called remeron.
he will continue on the abx ceftin and start rifampin. then in 3 weeks, we will add in another abx called biaxin.
for system support, he will start avipaxin and continue with moly-b, magnesium, fish oil, quercetin and vitamins.
both the boys will have a follow up appointment with DR H in 6 weeks. additionally, DR H wants all of us to have an in office appointment with our doc in seattle, DR D. those have been scheduled for march 22. for now, we will work to implement the new treatment plans and then brace for whatever comes next and just soldier on.
that concludes my big, long rambling run down.